First post and results: Hi I have been hanging... - Thyroid UK

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First post and results

FredMc profile image
7 Replies

Hi I have been hanging around in the background on the forum for some time now. But never had the confidence to post an introduction. Eventually forced myself to do that so here is a short summary of my medical history leading up to where I am now.

Around 10 years ago I noticed a swelling on the left side of my neck. Decided to ignore it and carry on. Didn't bother me to much.

That was followed by recurring anal fistulas that had to be laid open to heal at least twice a year. Eventually I came across a surgeon that got it sorted with by establishing a permanent fistula.

During one of the many visits to the theatre it was noted that I had this goiter. A ultrasound scan was done but never followed up on.

The surgeon that sorted my fistula mentioned that he looked and didn't find any evidence of crohn's disease. This was about 2 years ago.

Only recently I read somewhere that thyroid issues can cause crohn's that in turn can cause anal fistulas.

Soon after my GP send me a letter to follow up on the thyroid. Did test and found to be borderline hypo but not quite sure what caused it. Unfortunately I have not blood results from that time.

I was then sent for MRI and glucose tolerance tests. Everything came back normal. But I started feeling ill and putting on weight.

My bloods at the time (October 2016) was TSH normal and T4 9 (12-22)

Been referred to an endo that said everything is fine but the goiter needs to be looked at.

Got a referral to ENT more scans and biopsy it was decided to remove my left thyroid. It was getting serious and interfering with breathing and swallowing.

December: TSH 0.84 (0.3-4.5), T4 8.6 (12-22)

Surgery was done in January

Initially after the surgery I was feeling better but hings quickly started going bad.

February: TSH 2.47 (0.3-4.5), T4 10.6 (12-22)

April: TSH 2.96 (0.3-4.5), T4 12.2 (12-22)

June: TSH 1.4 (0.3-4.5), T4 11.7 (12-22)

Follow up with Endo she said I am fine and will survive just fine. No interest in listening to my symptoms. Making sure I know she is the only Endo at the hospital.

Anyway I decided to get bloods done by BlueHorizon because I can feel I am not fine. The usual symptoms is getting worse.

Putting on weight, brittle nails, hair thinning, no concentration, lack of confidence, emotional, constipation, tinnitus, mood swings, overheating, easily cold. The list just goes on.

BlueHorizon results was a bit of an eye opener.

Biochemistry

CRP 2.60 <5.0 mg/L

Ferritin 69.0 30 - 400 ug/L

Thyroid Function

TSH 2.20 0.27 - 4.20 mIU/L

T4 Total 81.8 64.5 - 142.0 nmol/L

Free T4 12.25 12 - 22 pmol/L

Free T3 4.77 3.1 - 6.8 pmol/L

Immunology

Anti-Thyroidperoxidase abs 7.9 <34 kIU/L

Anti-Thyroglobulin Abs 10 <115 kU/L

Vitamins

Vitamin B12 270

Deficient <140 pmol/L, Insufficient 140 - 250, Consider reducing dose >725

Serum Folate L 4.74 8.83 - 60.8 nmol/L

Obviously there are serious issues with my vitamins that needs sorted but what is the feeling about the thyroid levels?

Sorry for the long post but I feel it was necessary to give a bit of background.

Another thing I was wondering about. I am working permanent nightshift. What would TSH do during the night while working. Considdering that its a good idea to get bloods done early while THS is still high. Would I be correct in thinking TSH would be low after a nights work?

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FredMc
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7 Replies
Treepie profile image
Treepie

It seems you need an increase in hormones to get TSH to nearer 1 or below and increase FT4 and FT3. But as you recognise the vitamin levels need to be right to get the best from the levo.Have a look at Seaside Susies answers to folk on this aspect. Sorry but no idea about effect of night shifts .

FredMc profile image
FredMc in reply to Treepie

I get the feeling my GP is willing to put me on a trial at least but seems she is afraid of the Endo for some reason... Endo said at the last visit she is done with me but no discharge letter from her yet. Not sure how its suppose to work to get back under the care of my GP.

greygoose profile image
greygoose

I don't think your endo knew very much about thyroid. She should have thought about central hypo straight away, and tested your pituitary/hypothalamus. It is not normal to have an FT4 under-range like that, with a low TSH.

FredMc profile image
FredMc in reply to greygoose

Ohh she knows everything about thyroid. She had the same surgery and survives just fine and she is the only Endo at the hospital...

When she made that statement I lost interest in her and couldn't wait to get out her office.

I can accept TSH not to bad but something is wrong and I am not getting anywhere.

Had a MRI scan to look at the pituitary. That came back "fine"

greygoose profile image
greygoose in reply to FredMc

I take it you're being sarcastic there, yes? :) But, just because she's doing fine, doesn't mean everyone else will, does it? We're all different.

Your TSH shows your thyroid is struggling, but doesn't reflect your low FT4. But, it's not the TSH that causes symptoms, it's the T3, and yours is low.

An MRI scan is not going to tell you everything about the pituitary - and what about the hypothalamus? What she should do is test your other pituitary hormones, like the HGH, and if they're low, then there is a problem with your pituitary.

FredMc profile image
FredMc in reply to greygoose

yes being sarcastic. Might feel bad but still have a sense of humour. Only thing that keeps me going. Having a laugh about it.

Seem to remember the GP mentioning HGH at some point. Will have to go and ask if there is any results relating to that.

Thanks for the input.

greygoose profile image
greygoose in reply to FredMc

You're welcome. :)

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